u/Just_Requirement_313

My baby was born at 3 lb 6 oz and today we discharged at 5 lb 1 oz after 34 days in the NICU. Since my baby has been 4 lbs he never had a single temperature regulation issue and while our stay room was kept warm, I often snuggled him in only a sleeper after feeds with no issue. Our main issue the last couple weeks before discharge was sleepy feedings, so we were encouraged to strip him down to eat, which we’ve been doing.

Today, we bring little man home, and we are hanging out around the house playing with his big brother, and focusing on making sure he is eating well because he only gained 2 grams overnight last night and we have a pedi appointment first thing in the morning. Well, at 7:30pm I give him a bottle, he chugs down 1.5 oz with ease, and I go to burp him and I realize his head is pretty cold. Immediately take his axillary temp which read 94.4 and rectal temp was 95.3. I freaked out and immediately worked on warming him up (space heater in his room, skin to skin under a thick blanket with a hat on, owlet on to double check his vitals) and after a half hour his rectal temp was up to 97.3 and we continued warming him above 98 and came up with a better plan to keep him warm at the house.

I don’t know why, but temperature issues never even crossed my mind. At discharge today, everyone was emphasizing feedings. And of course we went through all the things “call the doctor if” and temp was there, but that was the last thing I thought. Nobody said “make sure you set the thermostat to x and make sure you have him wear x” and I feel so stupid because of course he got cold, his NICU room was so warm.

I feel like a failure of a mom and I can’t believe I let his temperature get that low. And now I’m not going to get sleep tonight because I’m going to be worried that he’s dropping temp again. 😔

Baby boy was born 33+2 at 3 lb 6 oz and is now 37+5 and 5 lb on the dot. He’s been off respiratory support since day 7 and we haven’t had a single event in well over a week. We have strictly been a feeder/grower for going on 4 full weeks now and we are near the end. But it just feels like I keep getting told goals we need to meet, we meet the goal and I get excited and get my hopes up, and then they get squashed when the doctors come by to round.

For example, last week we spent 3-4 days in a row between 65-75% of feeds PO and every provider kept saying things like “he’s so close, once we get to 80% we can move to shift goals” then he had two good days, the first at 79% and the second at 81%. In addition, I started rooming in at this time which only made me more exhausted and anxious. I was so excited when we hit 81% and then a nurse practitioner came in at 8am and said she was concerned to take him to shift goals because he had only finished one bottle the day before. Mind you, his goal was 43 ml and he had one bottle at 41 ml and two at 40 ml. But they didn’t seem to look at that or care how close he was or that *he literally met his goal*. So I felt like the rug was pulled from under me but we prevailed.

Last night, my son pulled out his NG tube so this morning they decided to move to shift goals because he was over 90% po yesterday. They set his goal at 170 ml and my son has absolutely crushed it on day shift and got 185 ml with absolutely no issues. The day shift nurse informed me today before the last care time that they were doing the circumcision first thing in the morning, so she was going to ask the NP if they should do the car seat test tonight (it’s in the room and has been for a few days) in anticipation of discharge if he meets his goals. Well, she came back and said “no we can do it tomorrow night” and gave no explanation as to why.

Basically it just feels like I get told one thing by nurses and some providers, then we meet our goal and the provider that day makes my kid prove himself an additional day. What’s the point of having goals if we don’t let him move to the next step just because he *might* regress and fail? I’m just ready to leave and if he has a good shift tonight, I have full confidence in being home. I’m so frustrated…. and exhausted.